VIDEO and Original article can be found here: https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12331040

By: Nathan Morton  Video Journalist, Rotorua, NZH Local Focus  nathan@localfocus.nz @NMortonOfficial

While May has been significant for all sorts of Covid related reasons, for one group of New Zealanders, May is a time to campaign and raise awareness of an often crippling illness.

May is International ME/CFS Awareness Month. ME campaigners like Elizabeth McGougan, see this as the perfect opportunity to remind people that while the country experienced being home-bound for four weeks, people with ME experience this almost every day of their lives.

“Living in level 3 is how we normally live,” McGougan said.

“It just might give people a little idea of how complicated and difficult it is living with this illness. The fact is we would love to leave our home and do all these great things, but we can’t because our bodies don’t let us.”

The impacts and cause of ME, also known as Chronic Fatigue Syndrome, remains relatively unknown. Yet up to 20,000 Kiwis are diagnosed with it.

“For me, it is constant tiredness, constant lethargy,” Barb Edwards, an ME patient living in Tauranga said.

“I’ve never been an energetic person, my entire life. I’ve always struggled with exercise, I’ve struggled with doing things that ‘normal people’ do all the time, because I just do not have the energy to do them.”

“My life has been flipped upside down,” said ex-cakemaker Mandy Dawes.

“Things that I used to be able to do, I couldn’t do. I’ve felt like a hypochondriac, that all these things were going wrong for me and still do. Every time you think you’re on top of things, they come along and wipe you back out again.

“Life is just really different.”